Guidance Welcomed

Truenortherngirl

Hi, this saga of mine doesn't seem to stop.  After being treated for simple hyperplasia last summer (2019) I had a biopsy which was hyperplasia free (following 4 months on megestrol acetate).  My periods did return but about every 6 to 7 weeks (despite being 52 my bloodwork says I'm not menopausal).  Then just over a month ago I started a marathon period which continues to this day.  So back to the gyne I go and he did the usual ultrasound....nothing unusual was found.  But bleeding hasn't abated so I'm scheduled for a biopsy next week and a I.U.D. insertion.  I am getting pain on and off (sometimes I need to medicate) but it is not cramping pain.  Any recommendations and insight?  Thanks.

 

MAbound

More than a biopsy

Biopsies are hit or miss as far as diagnosing cancer. Given your continued bleeding, I'm surprised your gyn isn't thinking D&C. If I were you I'd insist on that or ask for a referal to a gyn oncologist who would have more expertise in ruling out cancer for you. Hyperplasia is a pre-curser to cancer, the bleeding you are describing is never normal, and since it's been a problem for this long for you, you do not want to dilly-dally with it.

ChessieMae

I Agree .....

I have to agree with MAbound.  This really needs more checking out. I would certainly head to a gyn oncologist right away.  It is better to be overly cautious with these kinds of cancers. Safe, rather than sorry! Good luck, hope all goes well..

Truenortherngirl

MAbound said:

More than a biopsy

Biopsies are hit or miss as far as diagnosing cancer. Given your continued bleeding, I'm surprised your gyn isn't thinking D&C. If I were you I'd insist on that or ask for a referal to a gyn oncologist who would have more expertise in ruling out cancer for you. Hyperplasia is a pre-curser to cancer, the bleeding you are describing is never normal, and since it's been a problem for this long for you, you do not want to dilly-dally with it.

Thanks

Hi, thanks for your response.  I inquired exactly that with my gyne "you can't miss anything with the biopsy" and he said no.  I hate being made to feel as if I'm over reacting!  When I'm in there for the biopsy next week I'm goint to push more.  They seem really reluctant here in Canada to send you to an oncologist of any sort until cancer is confirmed.  Also they seem to think it's old fashioned medicine to provide hysterectomies these days unless it's absolutely necessary?!  Thanks again.

Truenortherngirl

ChessieMae said:

I Agree .....

I have to agree with MAbound.  This really needs more checking out. I would certainly head to a gyn oncologist right away.  It is better to be overly cautious with these kinds of cancers. Safe, rather than sorry! Good luck, hope all goes well..

Thanks ChessieMae

It's a bit frustrating when they refuse to refer you to a gyne-oncologist and/or give me a D&C.  It's not as if I can readily go somewhere else either because we have universal health care in Canada and you get who you get (although universal health care is great).  My only other option is to cross the border to get a second opinioun or D&C but I don't think I can do that with Covid now.  Thanks again.

CheeseQueen57

Cry

Cry, get hysterical, do whatever you have to do to get a D&C. Don't settle for IUD and more time. There's something really wrong. I know it's hard but now's the time you have to assert yourself. I'm sorry you have to do this but sometimes that's the way it is. Good luck to you and we're all behind you. 

MAbound

Truenortherngirl said:

Thanks ChessieMae

It's a bit frustrating when they refuse to refer you to a gyne-oncologist and/or give me a D&C.  It's not as if I can readily go somewhere else either because we have universal health care in Canada and you get who you get (although universal health care is great).  My only other option is to cross the border to get a second opinioun or D&C but I don't think I can do that with Covid now.  Thanks again.

Insurance

Maybe if you asked him if he thinks he has good malpractice insurance or not, your current doctor would find a way to be a bit more thorough checking you out. I was 59 and still hadn't gone through menopause when I was diagnosed. Late menopause is a real thing, but it's also a big risk factor for endometrial cancer, as is the hyperplasia, as is the abnormal bleeding, as is the pain (is it stabbing vs. cramping?). Are you overweight? Did your periods start before age 12? Do you have diabetes? Is there a history of hysterctomies or cancer in your family?  Have you had children? Cancer needs to be definitively ruled out by the kind of abnormal bleeding you are having. I had 2 normal ultrasounds in the 2 years prior to my diagnosis, so those were useless for catching it early, too. If you don't get biopsied exactly where cancer is, it can be missed. I was a stage 3a, grade 3 when I was finally sent to a gyn oncologist which was way too late. I wish I had known then what I know now and challenged the "let's wait and see" doctor that I had about her dithering. You can't be passive about getting diagnosed with certainty one way or the other. Make a list of all of the risk factors you have for endometrial cancer and point them out to this doctor. He needs to see the light!

Forherself

CheeseQueen57 said:

Cry

Cry, get hysterical, do whatever you have to do to get a D&C. Don't settle for IUD and more time. There's something really wrong. I know it's hard but now's the time you have to assert yourself. I'm sorry you have to do this but sometimes that's the way it is. Good luck to you and we're all behind you. 

I agree

I am very familiar with the Canadian system. My husband is Canadian but we live in the US.  We have lots of Canadian relatives.  Some of whom are doctors.  You have to ADVOCATE for yourself.  And exaggerate your symptoms.  That pain you have is the worst.   They will do more to identify the cause of the pain.   If you get. my meaning.

It also looks really bad in a chart when the patient complains of excruciating pain and the doctor doesn't indentify the cause.   You should just be able to have a hysterectomy and have it all over with.

MoeKay

Ultrasound didn't help in my case either

My ultrasound didn't raise any red flags as far as endometrial cancer is concerned.  It mentioned a "probable fibroid."  However, after my hysterectomy there was no fibroid, but there was endometrial cancer that had invaded approximately 80% of the thickness of my uterine myometrium.  Needness to say, I don't place much if any value on these ultrasounds, and as mentioned above, uterine biopsies only sample the uterus so that cancer can easily be missed.  I would push for a D&C to get answers sooner rather than later. 

 

Forherself

Maybe helpful.

https://www.uptodate.com/contents/management-of-endometrial-hyperplasia/print#!

Truenortherngirl

MAbound said:

Insurance

Maybe if you asked him if he thinks he has good malpractice insurance or not, your current doctor would find a way to be a bit more thorough checking you out. I was 59 and still hadn't gone through menopause when I was diagnosed. Late menopause is a real thing, but it's also a big risk factor for endometrial cancer, as is the hyperplasia, as is the abnormal bleeding, as is the pain (is it stabbing vs. cramping?). Are you overweight? Did your periods start before age 12? Do you have diabetes? Is there a history of hysterctomies or cancer in your family?  Have you had children? Cancer needs to be definitively ruled out by the kind of abnormal bleeding you are having. I had 2 normal ultrasounds in the 2 years prior to my diagnosis, so those were useless for catching it early, too. If you don't get biopsied exactly where cancer is, it can be missed. I was a stage 3a, grade 3 when I was finally sent to a gyn oncologist which was way too late. I wish I had known then what I know now and challenged the "let's wait and see" doctor that I had about her dithering. You can't be passive about getting diagnosed with certainty one way or the other. Make a list of all of the risk factors you have for endometrial cancer and point them out to this doctor. He needs to see the light!

Oh Geez

You guys really have me scared but I suppose that is the what I should be.  My mother passed from cancer at the age of 44 but of lung cancer. (I was 6 years old).  She had a hysterectomy two years before she was diagnosed with lung cancer.  My grandmother (Dad's side) passed from ovarian cancer.  Aunt and father died of leukemia.

I was diagnosed with PCOS after I had my second child when periods dissapeared for two years.  I pretty much ignored it and didn't think it had much bearing on my life.  I might be 10 lbs overwieght as most but exremely active (fitness addict).  Periods started late actually (I was almost 15) and as previously mentioned bloodwork shows no indication of menopause.  

The pain is more of a sharp pain coming from a specific area and it has come and gone over a the last 2 years. The last bout I experienced was the worst though.  It's so strange...upper left part of the vaginal wall and/or cervic maybe?  Feels deep into the tissue and not on the surface though.  When the physican looked they said they couldn't see anyting?  

Truenortherngirl

CheeseQueen57 said:

Cry

Cry, get hysterical, do whatever you have to do to get a D&C. Don't settle for IUD and more time. There's something really wrong. I know it's hard but now's the time you have to assert yourself. I'm sorry you have to do this but sometimes that's the way it is. Good luck to you and we're all behind you. 

Thank you CheeseQueen57

I will try my best.  I do suffer with anxiety, maybe I can play that card?  Honestly I don't need the plumbing anymore and I would rather not worry about this.  I'll get back and update all you great ladies.  xoxo

Truenortherngirl

MoeKay said:

Ultrasound didn't help in my case either

My ultrasound didn't raise any red flags as far as endometrial cancer is concerned.  It mentioned a "probable fibroid."  However, after my hysterectomy there was no fibroid, but there was endometrial cancer that had invaded approximately 80% of the thickness of my uterine myometrium.  Needness to say, I don't place much if any value on these ultrasounds, and as mentioned above, uterine biopsies only sample the uterus so that cancer can easily be missed.  I would push for a D&C to get answers sooner rather than later. 

 

Thanks MoeKay

So did you not even have a thickened enodmentrium at all?  Just bleeding?  All of you have given me the push I need to be more proactive.  Sometimes I feel I don't have it in me but with the support of you ladies, I have a new resolve.  Thank you!

CheeseQueen57

MoeKay said:

Ultrasound didn't help in my case either

My ultrasound didn't raise any red flags as far as endometrial cancer is concerned.  It mentioned a "probable fibroid."  However, after my hysterectomy there was no fibroid, but there was endometrial cancer that had invaded approximately 80% of the thickness of my uterine myometrium.  Needness to say, I don't place much if any value on these ultrasounds, and as mentioned above, uterine biopsies only sample the uterus so that cancer can easily be missed.  I would push for a D&C to get answers sooner rather than later. 

 

Fibroid

They debated about a fibroid in my case too. But post menopausal women I don't think get fibroids and I never had them before. Ultrasound not diagnostic. D&C most helpful. 

Truenortherngirl

Forherself said:

I agree

I am very familiar with the Canadian system. My husband is Canadian but we live in the US.  We have lots of Canadian relatives.  Some of whom are doctors.  You have to ADVOCATE for yourself.  And exaggerate your symptoms.  That pain you have is the worst.   They will do more to identify the cause of the pain.   If you get. my meaning.

It also looks really bad in a chart when the patient complains of excruciating pain and the doctor doesn't indentify the cause.   You should just be able to have a hysterectomy and have it all over with.

I agree, I don't want to

I agree, I don't want to worry about this any longer.  The pain has been to the point where I've resorted to a mini ice pack between the legs and lots of advil!

Truenortherngirl

CheeseQueen57 said:

Fibroid

They debated about a fibroid in my case too. But post menopausal women I don't think get fibroids and I never had them before. Ultrasound not diagnostic. D&C most helpful. 

They are strongly resisting a D and C

I don't know why they are so resistent to a D and C?  I've been told I had a fibroid too but it hasn't changed in size for a while.  Also a cervical cyst?

MAbound

Truenortherngirl said:

Oh Geez

You guys really have me scared but I suppose that is the what I should be.  My mother passed from cancer at the age of 44 but of lung cancer. (I was 6 years old).  She had a hysterectomy two years before she was diagnosed with lung cancer.  My grandmother (Dad's side) passed from ovarian cancer.  Aunt and father died of leukemia.

I was diagnosed with PCOS after I had my second child when periods dissapeared for two years.  I pretty much ignored it and didn't think it had much bearing on my life.  I might be 10 lbs overwieght as most but exremely active (fitness addict).  Periods started late actually (I was almost 15) and as previously mentioned bloodwork shows no indication of menopause.  

The pain is more of a sharp pain coming from a specific area and it has come and gone over a the last 2 years. The last bout I experienced was the worst though.  It's so strange...upper left part of the vaginal wall and/or cervic maybe?  Feels deep into the tissue and not on the surface though.  When the physican looked they said they couldn't see anyting?  

If your mother had a

If your mother had a hysterectomy 2 years before her lung cancer do you know why she had it? The two most likely places for a recurrence of endometrial cancer after initial treatment is the vagina and then the lungs, so it's possible that the lung cancer wasn't a new cancer but metastasis of an original cancer in her uterus. You'll probably never know just like I'll never know if my mother's hysterectomy in her 40's was for cancer, but such a family history adds to your risk.  PCOS is also another risk factor for this cancer that I forgot to mention, so it's all kind of adding up for you.

I apologize for scaring you, but we are very concerned about your doctor doing a biopsy on you again because it would be just too easy for cancer, if you do have it, to be missed with this test. Your risk factors and symptoms warrant a more diffinitive test. That sharp pain you are having really concerns me, too. That shouldn't be happening and shouldn't be dismissed. This is a slow growing, very curable cancer these days, but the earlier it is caught, the better. Do what you have to to get better testing. We all hear alarm bells ringing based on our own experiences.

MoeKay

Truenortherngirl said:

Thanks MoeKay

So did you not even have a thickened enodmentrium at all?  Just bleeding?  All of you have given me the push I need to be more proactive.  Sometimes I feel I don't have it in me but with the support of you ladies, I have a new resolve.  Thank you!

Ultrasound reported endometrial stripe of approximately 7.3 mm

Since I was 51 going on 52, but still premenopausal at the time, I believe this would have been considered a normal endometrial thickness.  Also, after surgery, my gyn-onc told me that the "probable fibroid" reported on the ultrasound turned out to be the major site of my cancer. 

Best of luck in getting to the bottom of your issues soon. 

 

Forherself

I would list my risk factors.

I have come to realize that the women here have a lot of knowledge.   Sometimes I wonder about gynecologists.   They see more benign biopsies that malignant, so I think they sometimes get complacent.  My own gynecologist looked at my Us and said I'm sure it's nothing.  It was not nothing. He waited along time to do my D and C.  I actually had a laporoscopic biopsy of a polyp outside my uterus and cysts on ovaries.   In your case, TrueNorth, you do have quite a few risk factors for endometrial cancer.  Your gynecologist needs to be reminded of them.  YOur history of cancer on both sides.  I agree you don't know that the lung cancer your mother had was not a recurrence of endometrial cancer.  Her cancer was a long time ago.  And you said when your gynecologist "looked" at the area of your pain, what does that mean?  He or she cannot "see" a small growth.  He should be identifying the cause of this pain.  If you look up the risk factors see how many you have and make sure your gynecologist knows all of them.  You deserve a D and C.  

Truenortherngirl

Forherself said:

I would list my risk factors.

I have come to realize that the women here have a lot of knowledge.   Sometimes I wonder about gynecologists.   They see more benign biopsies that malignant, so I think they sometimes get complacent.  My own gynecologist looked at my Us and said I'm sure it's nothing.  It was not nothing. He waited along time to do my D and C.  I actually had a laporoscopic biopsy of a polyp outside my uterus and cysts on ovaries.   In your case, TrueNorth, you do have quite a few risk factors for endometrial cancer.  Your gynecologist needs to be reminded of them.  YOur history of cancer on both sides.  I agree you don't know that the lung cancer your mother had was not a recurrence of endometrial cancer.  Her cancer was a long time ago.  And you said when your gynecologist "looked" at the area of your pain, what does that mean?  He or she cannot "see" a small growth.  He should be identifying the cause of this pain.  If you look up the risk factors see how many you have and make sure your gynecologist knows all of them.  You deserve a D and C.  

I know it's time to speak up....

I'm seeing my Dr this Wednesday.  I feel kind of bad showing up for what is supposed to be another biopsy and the insertion of IUD then to only demand a D&C.  But it doesn't change that you are completely right...the best way to convince him is to write a comprehensive list of my risk factors and history.  I no longer have my old gyne because I moved and only got this new one because I landed in the hospital with a 6 week period! 

On the positive front, I just heard from the breast clinic that the two nodules in my right breast are static and I am to repeat mammogram and ultrasound in 6 months.  Who knew my 50's would be such a challenge!   Thank you, Truenortherngirl.